ETB 52: Have you ever wondered what it takes to raise a child with Down syndrome? Embark on an intimate journey with Susan Aguilar, a mother who shares the honest truth about the joys and challenges she's encountered while raising her son, Adrian. From the ease of his younger years to the hurdles of his adulthood, she paints a vivid picture of their undying resilience.
We unravel the secrets of her success in homeschooling a child with Down Syndrome, with Susan sharing her experiences of crafting and tweaking curriculums for Adrian. Experience the flexibility of homeschooling firsthand, and appreciate how it has allowed Adrian to hone essential skills. We then shed light on a darker side of their journey, as Susan recounts their struggles with Adrian's anxiety, which ebbs and flows with the weekdays and weekends. Our discussion about the impact behavioral therapist, Josie Avila brought, reveals the coping strategies that have been instrumental in managing Adrian's anxiety.
Lastly, we look towards the horizon as we envision Adrian's future. As Susan shares her dreams for Adrian's independence, we talk about the importance of a robust personal support network. Ending on an uplifting note, we introduce you to Adrian's Tasty Treats, a testament to Adrian's entrepreneurial spirit. This endeavor not only helps Adrian manage his anxiety but also enhances his social skills. We invite you to join us as we celebrate love, resilience, and hope in this unparalleled journey of parenting.
Adrian's Tasty Treats
https://www.facebook.com/profile.php?id=100088650903014
The Jet Pac
https://www.thejetpac.com/
Swallowing and Speech Services
https://www.swallowingandspeechservices.com/
Psychologist
https://www.drmgarcia.com/
https://www.psychologytoday.com/us/therapists/michelle-garcia-the-woodlands-tx/77407
A Good Life Book
https://www.amazon.com/Good-Life-Your-Relative-Disability/dp/B000W5TBH6/ref=sr_1_1?crid=28PO1Q01XYIOA&keywords=a+good+life+by+Al+Etmanski&qid=1693769736&sprefix=a+good+life+by+al+etmanski%2Caps%2C113&sr=8-1
Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Hey there, I'm Sandy Deppish, and this is the Embrace
the Blessing podcast.
Each week, I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Well, thank you so much forbeing here.
I was just thrilled to have youon.
I was thinking about it today.
Your family was one of the veryfirst families we met when we
moved to Houston that had achild with a disability very
(00:52):
well, same disability as our sonhad.
I don't want to steal yourthunder I'll let you talk about
that, but I remember my husbandcoming home and saying I just
met the greatest family and theylive in our neighborhood and it
made us feel like we belonged.
Speaker 2 (01:06):
Yes, it was very, I would just want to say, maybe
just a divine moment, becausethere wasn't anyone else in the
neighborhood that I had met thathad a child with a disability.
Speaker 1 (01:18):
Yeah, yeah.
And it just felt like a kindred, like we had a kindred spirit
between us.
Speaker 2 (01:22):
We did, we really did .
It was amazing.
Speaker 1 (01:25):
Awesome and the families were what like three at
the time they are a year apart.
Speaker 2 (01:31):
So Josiah is a year older than Adrian.
So Adrian was two, josiah wasthree.
Yeah, yeah, gosh and now lookat them, I know.
Speaker 1 (01:42):
So what I would like you to do is introduce yourself
and tell us a little bit aboutyou.
Speaker 2 (01:47):
Oh, about me?
Well, first let me introducemyself.
My name is Susan AguilarAguilar.
In Spanish, a series is Aguilar, right, yeah?
So I well, I want to tell you alittle bit about my family, if
that's okay.
Yes, I have.
I've been married to my husband, julio, for 28 years now.
(02:08):
We have two kids.
My oldest is Juliana, she's 24,24.
And Adrian is my child withDown syndrome, and he is 20.
And we live in the suburbs ofthe Houston area, the chaotic
Houston area.
Speaker 1 (02:25):
Yes, it just keeps growing and growing and growing.
It does so.
Tell us a little bit aboutAdrian, because that's why we're
here.
We want to learn more aboutwhat life has been like
navigating this path with him.
Speaker 2 (02:37):
Well, in the beginning, I mean it was really
and I shouldn't say easy, butwhen they're little it was just
easier.
It was easier to navigate lifewith them.
You know he was small, he was,you know he obeyed, he listened.
When he got older it's we hadissues with him as far as
(03:00):
anxiety issues and we couldn'tfigure out what that was.
But for the most part, Adrian isjust a very gentle yes, a
gentle spirit, very gentle, justlike his dad, and he's very
laid back, loves music, loves todance, loves meeting new people
.
I mean, he absolutely likesmeeting new people.
He likes going up to people and, just, you know, introducing
(03:22):
themselves.
If he sees a person with adisability, he'll say, hey, I
know them from the center, or Iknow them, or he'll go up to
those people with thedisabilities because he feels
like they're like him.
Yeah, yeah, you know, and heunderstands, and so he'll go up,
or he'll tell me, you know, letyou know, or he'll point for us
(03:43):
to go and introduce ourselves.
That is so sweet, so, yeah, andso he does that.
But for the most part he's justvery, he's a very chill kid for
the most part.
He really is Well.
Speaker 1 (03:55):
so let's back up to when, before he was born, did
you know you were going to havea child with a disability?
Speaker 2 (04:01):
None at all.
I didn't know at all, and itwasn't until he was born, that
we found out, Did they tell youimmediately or did it?
Speaker 1 (04:09):
oh the day, Okay yeah .
Speaker 2 (04:11):
Well, they told me hours later because I had a
C-section with him.
And so they came in and beforethey even gave him to me, you
know, the nurse was at the footof my bed and telling me your
son has a lot of characteristicsof Down syndrome.
And I was like, what does thatmean?
I had no clue, Sandy, no cluewhat Down syndrome was.
I had a neighbor who her sonhad Down syndrome, but I yet
(04:37):
didn't understand all of it.
You know, I didn't know what hehad.
I knew he had a disability.
Speaker 1 (04:42):
Right.
Speaker 2 (04:43):
And she was a God sent.
She really was.
She came in and helped and just, you know, helped with a lot of
information and encouragementand just told me it was going to
be fine.
But I didn't know.
And when they told me that hehad Down syndrome, my first
thought was, like, is he goingto die?
You know, that's what was mythought.
I did not know anything aboutthat.
(05:05):
I thought it was an illness.
Right, that's really what Ithought, and so I wasn't
educated about it.
So after they told me you know,no, they lived about 50 to 60
years and like, oh, okay, let mehave no problem as long as he's
not going to die and there's astory behind that that I can't
(05:26):
go into right now, but it was.
It was more of a reassurance.
Okay Then.
And then in my part I knew wewere good and we could handle
what comes down the road.
So, and I know a lot of peopledon't feel that way, but it was
my journey and there wasreasonings for that.
As long as he wasn't going topass away, we were going to be
good.
Speaker 1 (05:44):
Right, and so how old was the neighbor's child that
had Down syndrome?
Speaker 2 (05:51):
When Greg was probably in his twenties.
Okay so she had a lot ofexperience.
Speaker 1 (05:57):
That was a great mentor for you to live near it
was.
Speaker 2 (06:00):
It really was right behind me and in and when we
lived in New York.
You know, in the homes in NewYork no one has a backyard fence
like we do in Texas.
Speaker 1 (06:09):
Right.
Speaker 2 (06:10):
And he was just my backdoor neighbor and we could,
just you know, cross ourbackyards and go into each
other's house and just you know,and that's when I had a better
understanding what Down syndromewas and educating myself.
Yes, after that you know, whatit was.
Speaker 1 (06:25):
What a blessing it was to have her right there.
You know, when Josiah was, whenhe was diagnosed, when I was
four months pregnant, we inUdero that we were going to have
a child with Down syndrome andmy reaction was kind of like,
wow, this is going to be cool wehave, for typically developing
kids Like this will be fun tohave a different adventure.
You know, like I'm always upfor adventure so I was thinking
(06:47):
it was a fun adventure.
Well, yeah, god laughed.
But anyway, what was sointeresting is the woman that
lived next door had a grandsonwho was, I think, maybe six to
nine months older, who had Downsyndrome.
Speaker 2 (07:02):
Oh, wow.
Speaker 1 (07:02):
And so she said come on over, meet my grandson, meet
my daughter, meet the family.
You can see that.
You know, he's just anotherchild, he just has the medals to
jump over, you know.
So I love that God put peoplelike that in our paths when we
were just in that very new stageof trying to understand what it
was going to be.
Speaker 2 (07:20):
you know, and you know the funny thing about that
before we had moved to New Yorkyou know we were my
sister-in-law was praying overus.
As she said there's going to bea woman in your life that's
going to help you.
Wow, and I'm like, okay, noclue as to what she meant and
that was before you.
Speaker 1 (07:39):
I mean obviously you didn't know you were going to
have a child with Down syndromeor anything.
Speaker 2 (07:42):
Yeah, yeah, yeah, and that was her.
Speaker 1 (07:47):
That's amazing.
Do you still keep in touch withher?
Speaker 2 (07:49):
Oh yeah, oh yeah.
She's one of our biggestcheerleaders with Adrian and us
with Craig.
Yeah.
Speaker 1 (07:55):
It's really nice.
Yeah, we still do.
Speaker 2 (07:57):
She lives.
You know we don't see her, butyou know we're in touch through
Facebook.
Speaker 1 (08:01):
Yeah, oh, I love that yeah.
So I know you have a lot ofthese because Adrian is an
amazing guy, but share yourgreatest joy in parenting Adrian
.
Speaker 2 (08:12):
I would have to say when we homeschooled him, even
though it was hard homeschoolinghim was hard in the sense that
I had to modify all of hiscurriculum, but I think the
greatest joy was seeing himgraduate from high school.
It really was.
That was one of our greatest,you know, my greatest joy,
(08:32):
because I knew that we hadaccomplished the homeschooling
process, which is not easy inthe first place at all, and then
to have to modify hiscurriculum.
But yet he had an understanding, a very good understanding of
what was being taught to him andhe enjoyed it.
(08:53):
And he especially enjoyedscience and history.
And a lot of that was becauseit was hands-on.
I mean, I think he could dowithout math and spelling and
all of that, but because ourcurriculum was, I made it
hands-on for him.
He really enjoyed those subjectsand he still, to this day, he
(09:13):
still has.
You know, we can be goingsomeplace and he'll see a planet
or he'll see a certain fish orwhatever.
You know what we had studiedand he'll say you know, he'll
tell me what it is.
So he still has memories, hestill has.
What do I want to say?
He still has, he stillremembers.
He still remembers a lot of theteachings that we did.
(09:35):
And yeah his accomplishment whenhe graduated from high school
was just really overjoyed.
It was just a joy to really,you know, see him and he was
proud.
Speaker 1 (09:46):
That's what I was going to say.
He was beaming.
Speaker 2 (09:49):
He was.
Speaker 1 (09:49):
I mean, he's always a pretty happy kid when he's out
and about, but you know, to seehim beaming at his graduation he
was definitely so, so proud.
It was just a huge, hugeaccomplishment.
Speaker 2 (10:00):
It was a huge milestone for him.
It really was, and for you too,I mean yes.
Speaker 1 (10:05):
Homeschooling.
You know, I homeschooled a fewof our kids when they were very
little, for, you know, four orfive years and it is not an easy
task.
It's a daily grace filled getme through this journey kind of
a thing.
And those are typicallydeveloping kids, right, yes, but
you throw in a child withchallenges and, like you're
saying, modifying the curriculum, like how did you know, did you
(10:25):
?
I mean, I guess what I'm askingis that was probably a very
labor intensive process.
It's not something you can doon the fly.
You have to prepare.
Speaker 2 (10:35):
And that's what I would do every night.
You know, as often as I could,I would just prepare and we use
curriculums that were, you know,like, for example, science, we
use the apology and they have ajunior book and so I use the
junior book and yet through thejunior book, I still had to
modify, you know, to his leveland just create.
I mean, I was online a lotprinting and cutting and just
(10:58):
just it was.
It was just it was a lot ofwork.
It really was.
But you know, if, when I lookback, I did, there was a point,
I think in the 11th grade, whereI did, I was just burned out
and I remember just telling himthat year I said this year we
are just going to focus on yourreading, your math and your
spelling, you know, because itgot to the point where I
(11:20):
couldn't open a book again.
Yeah, I just couldn't open abook because I was so burnt out,
because it was hard, but we gotthrough that year and he was
okay with that.
He was okay with that.
So when it came through his12th year, the grade, you know,
we went back to it and it wasbetter, but I was like, okay,
last year, we're good.
Speaker 1 (11:41):
But that's the beauty of homeschooling you can amend
the days or the weeks or theyear to fit what's going on in
your life currently, and youneeded a break.
Speaker 2 (11:50):
I did.
Speaker 1 (11:51):
And that was very wise of you to structure it that
way, so you could have somebreak down time too.
But here's what I think youneed your own graduation party.
Why don't we celebrate you, yay, you made it too.
Speaker 2 (12:05):
I retired, but yet I didn't, because we still, three
days out of the week, we stillwork on reading, phonics, speech
skill and math, and it's justto keep his brain going, it's
just to keep him not so muchbusy, but just to still have an
understanding of you know and hecan read and those are some
(12:29):
very proud moments.
They're small books, they'restill books of the first or
second grade, but he does areally good job with those and
it's just I'm very proud when hedoes that.
I always just told him you'redoing such a great job.
His math.
We've gotten to the point nowwhere in his math we still
continue to work with money,even though we're a society
(12:49):
right now that doesn't use awhole lot of cash.
But I, you know, he still knows, you know the bills and the
coins and what they are.
But now with math it's more ofusing his calculator.
Speaker 1 (13:01):
Yeah.
Speaker 2 (13:02):
So you know, and it works.
Speaker 1 (13:04):
Yeah, exactly, does he enjoy doing the schooling now
?
Speaker 2 (13:08):
He does when it's because it's shorter.
Yeah, I mean, there's timeswhen he wakes up and he's like
you know, what's on the agendatoday.
And I'm like if you went toschool and he's like, okay,
let's just, you know, hisattitude is like let's just get
that out of the way, you know,because he wants to go do what
he wants to do for the rest ofthe day, which is dance and play
with his toys, or you know.
(13:29):
So, yeah, I mean he, hetolerates it.
I should say he doesn'tcomplain about it, he tolerates
it and he knows it's for ashorter time, it's only 45
minutes.
Oh yeah, that's great.
Speaker 1 (13:43):
I love that you're continuing to stimulate his
brain and keep him active withthe things that he needs to
learn.
That's awesome.
So now I would like you to tellus about a time that maybe was
really difficult for you guys.
Think about what it was likewhen you walked through those
moments, and take us to thattime.
Speaker 2 (14:02):
I want to say it was about two years ago, maybe two
or three years ago, when hestarted having anxiety and we
didn't know what it was.
We didn't know why his handswould turn blue, his lips would
turn blue, he would vomit.
You know, just you know thingsthat made him anxious.
(14:23):
He would just throw up.
We cleaned up a lot of throw up, but we didn't know what it was
, even though, like, I took himto the gastrologist, I took him
to different doctors trying tofigure out what is going on with
him.
And I remember my daughter,juliana, telling me she was
taking a psychology class.
(14:44):
She goes you know that he'splaying you.
You know that he's manipulatingyou.
I'm like, not, my sweet boy,he's not manipulating.
That was hard for me to wrap mymind around.
It really was.
I couldn't believe that hewould do that because, you know,
then I started seeing a lot ofit was behavior, because he'd be
fine on the weekends, no issues, but during the week, you know,
(15:08):
he was having issues and it gotreally escalated.
We just, you know, startedworking with him and telling him
you can't do that, but he wouldstill do that, he would still
have anxiety during the weeks.
And finally, about a year ago,we were able to get a behavioral
(15:29):
therapist, josie Avila, withMichelle Garcia.
Psychology came into our lifeand what a concept she was.
She started working with him.
She would come weekly and startworking with him and it started
helping because he startedunderstanding that it wasn't
(15:51):
just us trying to tell him.
This behavior is not acceptable.
She started telling him.
She started telling him and shestarted giving us coping skills
, giving him coping skills whatto do.
And it took a while.
Still, it still took a while.
He still had anxiety.
He still had, for example, whenI had a calendar and I would
(16:15):
always fill his calendar up withall his activities and I guess
just the thought of some of theactivities when he would have to
think that he was going to godo those activities it would
just stir up anxiety in him andhe would just be so nervous he
didn't want to go.
And trying to get him there washard as well.
(16:38):
But once we got there, he wasfine.
He saw that he could enjoy theactivity, but he was getting him
there.
And so now what I do is I don'tput all of the extra activities
on the calendar anymore.
I, just an hour before.
I'll just tell him OK, let'sget ready, let's get going.
(17:01):
And that has seemed to work.
And Josie was here yesterday.
She now comes every threemonths.
She doesn't come weekly.
She helped so much with Adrian.
She worked with him, she talkedwith him.
She just really motivated himto be an adult.
Use your coping skills.
Learn how to use your copingskills to where, if you have
(17:25):
anxiety, you're able to usethose skills and come out of
that.
And it has worked.
It has worked.
Yesterday we had an issue.
Well, he didn't want to go runerrands with me, but there's no
one to take care of him at home,and so I had to go run the
errands and so he started usingthem and he's starting to use
(17:49):
them and he's starting torealize, oh, this is what I need
to do and this is how I need todo it.
And so she came in yesterdayand we told her the story and
she was just very proud.
She just says I am so proud ofyou, adrian.
She says you are becoming a man.
And she talks to you.
She goes you need to be a man,you need to be an adult, don't
act like a baby.
And he was just he was.
(18:09):
He was really happy to see that.
She was just proud of him.
Speaker 1 (18:14):
Yeah, she was proud.
Well, it sounds like he's madefantastic progress.
Speaker 2 (18:18):
He has, he really has .
So we still have our hiccups,we still have issues, but
they're not escalated like theywere.
Speaker 1 (18:28):
Right, yeah, and you know what?
It's interesting that you'retalking about anxiety, because
for years I had no clue that mychild had anxiety.
Speaker 2 (18:38):
Yeah.
Speaker 1 (18:38):
And when I think about it now, it makes so much
sense that I mean, we didn'thave the same symptoms of the
anxiety, but very clearly a lotof anxious thoughts or whatever
was going on in his mind causedsome behavior challenges.
And you know, I don't know howI discovered that, I don't know.
(18:59):
Maybe I read about it in a bookor something, but it was like a
light bulb moment, like, oh mygosh, it makes so much sense.
And I think that if you have achild with Down syndrome
specifically, and theirbehaviors are becoming a
challenge as they becometeenagers and young adults, that
might be something you want tolook at, because I was clueless.
(19:20):
Clueless, I mean, I try toresearch and stay on top of
things and try to understandeverything that's going on, and
that was the piece that justfell through the cracks.
And now I'm very aware and,like what you were saying,
adrian was very calm on theweekends but very anxious during
the week.
What I noticed is with one ofthe caregivers that Josiah had
had for a long time he's adifferent kid.
(19:40):
He's very calm, very peaceful,and then when that person is
removed from the situation, wehave this bundle of energy
that's spiraling out of controlsometimes, and I realized that
with that individual Josiah felttotal peace.
There was like yeah, totallyLike there was a confidence and
(20:02):
security and I don't understandhow it attached to that person,
but it did, and if we couldreplicate that and sell it in a
bottle would be millionaires.
But we've tried to mimicwhatever that was and it's just
not there for anybody else sofar.
That doesn't mean that it won'tbe, but it's interesting to me
(20:23):
that with certain people thatanxiety completely is gone, but
then when they're out of thepicture they're back to lots of
coping, trying to get throughthe limits.
Speaker 2 (20:34):
And that's what happens with Adrian.
Yes, and because his anxietywould subside because his dad
was here, or because Julia washere on the weekends, or it
could have been because wedidn't have anything scheduled.
Or the weekends were fun.
Do you see what I'm saying?
Yes, and it could have beenthat too.
And so it was.
(20:56):
And again it was with theperson, I mean his dad.
Adrian is so glued to his dadthat when he gets married he's
like I'm going to tell dad ordad's my favorite, you're not my
favorite anymore.
It's like it's OK.
Speaker 1 (21:10):
I don't want to be your favorite.
Speaker 2 (21:12):
It's OK, I'm glad he's your favorite.
He'll tell me, or he says he'smy best friend and I'm like I'm
glad he's your best friend.
But yeah, it is, it is.
It's with a certain person,it's a bond that they have.
Speaker 1 (21:27):
Right.
Speaker 2 (21:27):
And so.
Speaker 1 (21:29):
I'm so grateful that they, that at least they have
that with someone where theyhave those days of moments where
they're peaceful and calm andnot feeling that anxiety.
You know, it's interesting thatyou mentioned about the anxiety
causing causing him to vomit,because I just was talking to a
grown 20 something like closerto 30 something woman the other
(21:51):
day and she was saying that shewas very anxious and every time
she gets extremely anxious shevomits, and I had never heard of
that, you know.
I mean I was aware with Adrian,but I hadn't heard of that from
other people.
So I mean that makes sense.
Speaker 2 (22:06):
And to me, I think it was also a way that he couldn't
really express verbally whatwas going on, and so that was
the only way that he was able toexpress it.
It was just hey, I'm not doing.
Well, I'll show you.
Speaker 1 (22:24):
Let me show you how bad it is.
Oh God, bless him.
Well, I'm glad you're on theother side of that.
You know, and that had to be areally rough road.
Do you have any helpful hintsor tips that you use to keep a
positive attitude when thingsget really hard, Like in those
moments in those couple of yearswhen it was challenging and he
was you were cleaning upconstantly.
Yeah, how did you stay positive?
(22:45):
How did I stay positive?
Speaker 2 (22:47):
I cried a lot.
No, I had to really just.
I had to just really run to anemperor and just, you know,
because there was times when itwas just like I don't understand
this, this is hard, you know, Idon't know how to get through
it, and there was times when Ifelt like we were never gonna
(23:07):
get through it.
You know, because it was adaily challenge, a daily
challenge, and I just felt and Iwould just, you know, just to
be honest, would just run to Godand just say I can't do this
and just you know, being in Hispresence and in His word, I
would, you know, come out calmerand with a better perspective
(23:30):
and more clarity of mine as tohow to handle it, because it was
hard you know, it wasn't easyat all, especially having to
clean up all the time.
I remember one time, you know, Iwould try to hurry up and get
ready, you know, if we weregoing someplace and he was
playing with his toys and I wasgetting ready and I came out and
(23:50):
he had throw up all over himand he just looked at me like
what are you gonna do?
And those moments I mean it wasjust like and there was a lot
of those moments like a defiantmoment where he was being
defiant on purpose, and that'swhy I knew it was anxiety, but I
(24:10):
also knew it was behavior.
Speaker 1 (24:13):
Well, it sounds to me like it was anxiety that caused
him to be so to the point ofvomiting.
But he learned this delays usfrom going, or it stops us from
going, because now I probablyneed a shower, I've got to have
a change of clothes, We'vemissed the window to get where
we're gonna go for the eventwe're going to.
So he's smart and figured outoh, this is working for me,
(24:38):
which not fun for you guys.
Speaker 2 (24:41):
No, and we would clean up and we would have to go
and continue to do whatever wewere going to do.
But believe me, I was feeling,you know, because those were
hard times when you know you areready to go, and he just does
that.
Speaker 1 (24:57):
So do you think that it was the behavior therapist
that changed everything, or doyou think, like he matured a
little bit?
I mean what he did he didmature.
Speaker 2 (25:08):
I do believe that he was coming out of whatever that
teen year or was, and he did, hedid mature, he started maturing
and with Josie coming in atthat same time, it just worked
together.
Yeah, that's great.
Speaker 1 (25:23):
Yeah, so I mean the takeaway from this, and this is
why I always ask parents what'syou know a hard season that you
walked through and how did youget through it?
It's because we neveranticipate that things are gonna
be hard, especially whenthey're little and like you said
they're so easy and they're socute, and that's not to say all
kids are gonna do this, butthere come seasons where it can
(25:44):
be really, really hard, and whatI want people to understand is
it doesn't last forever.
Now it does, it's hard and youneed support to get through it.
You need that's what I said.
I never spent more time on myknees than I did during the
years when we went through majorchallenges.
But it brings you closer to Godand it gives you such a stronger
faith, and for me, I had tojust let it go and go.
(26:05):
He's yours.
Like you got this kid because Idon't you know, but I think
parents need to know it's notgonna last forever.
You will get through it andyou'll come out on the other
side stronger, and I think theplan is then that you reach back
and help others who arefollowing behind you to help
them know you're gonna be okay,like the neighbor you had with a
20 year old.
She's like it's gonna be fine,you're gonna be all right with
(26:26):
this, you know, which is prettyawesome.
So do you have a product or aresource that you can share that
has impacted your world in apositive way?
Speaker 2 (26:36):
Other than Josie.
No, I mean we go to Swallowingand Speech Therapy.
Miss Elizabeth has reallyhelped Adrien in his speech
therapy where he's now workingon putting sentences together.
You know Adrien usually speakswith one word or two words and
(26:58):
you know you have to kind offigure out what he's trying to
say.
But now we're working with withtrying to put sentences
together and yesterday whenJosie was here, she's like I am
understanding him a little bitmore when she was speaking to
him because she was justspeaking to him and she's like
his speech is much more clearerand he's speaking a little bit
(27:20):
more in sentences versus whereAdrien used to speak, you know,
with one or two words he wouldask him a question and or he
would say one word and you hadto decipher what he was trying
to say.
But Swallowing and Speech is agood resource.
Speaker 1 (27:39):
I'm glad you mentioned that, because that was
something I was gonna look intoduring the right before the
pandemic started and then it'sbeen out of my head ever since.
So I'm glad you said that Ineed to look that up for Josiah.
Yeah, that's good.
Speaker 2 (27:50):
I mean.
Well, we also attend theJetpack, which is something that
he has absolutely loved.
They have a program forindividuals with disability and
they challenge them.
You know they do challenge themevery time that they're going
to have a performance.
Speaker 1 (28:07):
Tell everybody what the Jetpack is.
What is that?
Speaker 2 (28:09):
Well, the Jetpack is a theater, vocal and arts
performance program and whatthey do is they put on a lot of
shows.
They put on a lot of dramashows, a lot of theatrical shows
, and they have a class for theindividuals with special needs
(28:31):
and it's just.
It's been really good.
It has been one of Adrian'sfavorite activities.
Speaker 1 (28:36):
You know, too, Does he get anxious before?
Speaker 2 (28:40):
he goes there Not at all Wow.
Speaker 1 (28:41):
And that's so interesting to me, because he
has to perform and he likes it.
No, he likes it.
Speaker 2 (28:46):
That causes anxiety for most other people right, but
not him.
He absolutely likes it, nevergets nervous.
He never gets nervous when hegoes there because it's one of
his favorite things.
Speaker 1 (28:57):
Yeah, yeah, that's really cool.
I love that.
What are your hopes and dreamsfor the future for Adrian Well?
Speaker 2 (29:05):
short term is to continue to work on with his
speech, to get him tocommunicate with other
individuals where otherindividuals are able to
understand what he is saying.
So that's my short term goalwith him to work that way.
Long term, I guess it's justreally to have him be more
(29:32):
independent, continue to work onhis life skills.
That I really don't have a planfor long term just yet.
Speaker 1 (29:43):
Right, yeah, I think that's the way a lot of us are.
I mean, it's hard to thinkabout the future for our kids.
I mean, for me it's easier toplan for just the next week or
the next couple of months, butto see way into the future is
like ooh, that's a lot, becauseit's a lot to just get through
the day sometimes.
Speaker 2 (30:02):
I was going to say that just trying to get through
the week, just trying to planfor the week, is a little bit
challenging sometimes, and notalways, but sometimes, and it
had been in the past.
But even the thought of longterm where is he going to be?
Whether is he going to be in agroup home?
I don't know.
Is he going to be with hissister when we're not here?
(30:23):
I don't know.
So those are the things that Ireally don't have quite of a
vision for just yet.
I think my whole thought on thatis to just get him to learn
more life skills, to beindependent.
Can he stay home by himself forseveral hours?
Can he prepare a meal forhimself, not on the stove or not
(30:47):
turning on the oven, but just abasic meal for himself?
Can he prepare those things?
Those are some of the goalsthat I would like to see and
that we are working on throughhis HCS program.
So those are the only goalsthat I have right now.
Like I said, I don't haveanything that's just out in the
(31:07):
future.
Speaker 1 (31:08):
Right, yeah, and here's where I always default
whenever people ask questionslike that what's going to happen
when he's over?
I don't know.
Speaker 2 (31:17):
I don't know God does .
Speaker 1 (31:19):
God does and he'll work out that plan and he'll
clue me in when I need to know.
You've heard us talk about thepersonal support networks.
Speaker 2 (31:27):
Yes, I have.
Yeah, Jennifer, I met up withJennifer at the Verne Cox Center
.
There was a swim day and wewere talking and she was telling
me a little bit about that.
Amazing, really.
Speaker 1 (31:39):
I'm reading the book that started that whole process.
It's called A Good Life.
I'll share the link with you andI'll put it in the show notes.
It's an amazing book about howso many people who initially
were even resistant to the ideaor just not sure they wanted to
open up the privacy of theirlives to their family, to others
(31:59):
.
But what happens is you'reslowly releasing.
That's what we do with ourtypically developing kids.
We slowly release them from usand wish them their own
independence and have a life oftheir own.
But then when we have a childwith a disability, we tend to
cling because we don't haveanybody we can feel comfortable
just releasing them to, and sothe idea is to empower other
(32:21):
people to get to know our kidsand everything that they need to
support them as well as we knowthose things, so that when
we're no longer able to if it'seven just for a short term maybe
you have a surgery or somethingor for the long term, all these
people know your child so wellthat it's like we got this.
And it doesn't mean they'regoing to come in and they're
(32:42):
going to take over and yourchild is going to move in with
them.
It means that they areempowered to be able to take
next steps according to thewishes that you have, and it's a
lengthy process.
It's like a marathon, not asprint, so you have time to
think through things together asa group.
I love it.
I am so on board with this idea.
Speaker 2 (33:03):
We're having.
Speaker 1 (33:03):
Joe Sy's first meeting with his team next week
and I'm just ecstatic becauseI'm like sit down and let me
tell you what you need to knowhere it comes.
Speaker 2 (33:14):
That's the beauty about what Jennifer was telling
me is that it's just my husbandand I that know all of Adrian's
information, and she says herthought was, when other people
know, like you said it, andwe're not available or something
happens to us, even if it'sshort term, all these other
people know.
They know his doctor's names,they know his appointments, they
(33:37):
know his Medicaid, Medicare,whatever Social Security, they
know all of more details abouthim in order to be able to care
for him.
Speaker 1 (33:48):
And it's so freeing to get that off your shoulders,
like I'm not the only onecarrying all that around in my
head.
Somebody else knows it too.
And what I love about it islike if there's something you
need to know, you can assignthat or ask if anybody in the
team is interested in hey, couldyou research this for me?
I really don't have time, but Ineed to know about this.
And then they can learn aboutthat for you and share it with
(34:10):
the group.
And now everybody knows that.
You know it's just, it's such asmart idea.
Speaker 2 (34:14):
And I think it's a smart idea in the sense that,
like you said, everyone knowsthe need Right.
You're not the only ones.
Speaker 1 (34:22):
And you know, what's really interesting to me is that
Josiah tends to prefer to beisolated if he doesn't like to
be in large groups.
He doesn't like to be around alarge amount of people.
And at his very first meeting,which was just, you know,
telling everybody what thissupport group is like so that
they can make a decision whetherone to be a part of his team or
not, he stayed in the meetingthe entire time.
(34:45):
It was like two hours.
He sat on the couch andlistened.
I was amazed by that.
And so the other thing about thepersonal support network sorry
I'm laboring this, but I'm justso passionate about him is that
it helps the individual, who isthe center of this support
network, understand that theyare not alone, that they have
(35:07):
people who care about them, andoftentimes our kids and us lead
more of a life of isolationbecause of the disability, and
now they have built in friendswho are there because they want
to be, not because they're paidto be.
Exactly.
And that really struck a chordwith me is that it's gonna
provide friendships for him, andI was like all about that.
Speaker 2 (35:30):
Well, for him to stay there I mean he was just.
I mean it has a lot ofunderstanding, more than I think
we all really realize and Ithink for him to listen and know
that the different individualswere there.
I think that made a difference.
Yeah, yeah, that was prettycool.
Speaker 1 (35:47):
So if you were sitting with someone who was
just about to step in your shoes, a new mom who was just about
to have a baby and they weregonna hand that baby, before
they hand that baby to you, theywere gonna say, oh, he has all
the characteristics aroundTindra, she's about to walk the
path that you walked.
What encouragement would yougive that person?
Speaker 2 (36:05):
I would tell her it's going to be okay.
It is going to be okay and Iwould say, embrace the blessing,
like you would say, because itis a blessing and the life that
one lives with a child with adisability has opened so many
doors of not only meeting somany amazing families yes, and
(36:28):
their child with a disability.
You know what?
I will go back into that and ina little bit, but I would just
say it's going to be okay.
Find a good support group.
Yeah, find a good support group, because you'll be walking the
path alongside with others whoare going to have the same
challenges or maybe a little bitdifferent, but it's about the
(36:48):
same.
And to have walked this walkwith people with disabilities
and the people that we have metand encountered, it's just a
rich world.
It really is.
I mean, people on the outsideprobably look at us or look at
the families and think, oh, theyfeel sorry for them because
they have a child with adisability.
(37:10):
But I think we, as a parent, Ithink we are their biggest
cheerleaders.
But not only that, we are thecheerleaders for all of the
individuals that we meet.
Right, you know, when they havethese accomplishments, we
really cheer them on as well,because we want to see them meet
(37:33):
their goals or just meet theseaccomplishments, and I think
that's a beautiful world.
What I have noticed is thatthere is not in this community
that we have been in, there isnot any competition within each
other.
I have noticed that, yeah, everyparent shares the other
individual's child rightaccomplishments on.
(37:54):
I mean, we support them, wecheer them on, we're glad, you
know, we embrace them and wejust love on them.
We really, really love on themand that's.
You know.
It's a beautiful world.
It really is, and I'm soblessed to be in it.
Would I ever had the chance todo it over again, I would want
(38:16):
to be here Because, like I said,the people that you meet you
know, and not only the people,the individuals, their hearts,
yes, you know, they're just gold.
They really are.
Speaker 1 (38:28):
They're just pure souls, just full of love.
I mean, you know, that's alwaysthe you know cliche people say
oh, people at Down syndrome,they're just so loving Well,
yeah, there's other sides tothat as well but they just are
so unconditionally loving that'sprobably the better way to say
it, cause they have theirmoments too, but they just
(38:50):
accept, and the parents as well.
The parents are so accepting.
You know like we don't alwaysfit in because of you know the
challenges that we have, but formy son I'm speaking.
But he is so welcomed andembraced, no matter where we go,
the moms are like we got this,we'll help you, he's okay, it's
all right and you feel verywelcome, even when internally
(39:14):
you're thinking I need to justget out of here cause this isn't
going well.
No, there's, I totally agree.
I think if we had not had achild with a disability, we
wouldn't have met the mostamazing people that we've
encountered in our lives, peoplewho are so genuine and loving
and selfless and compassionate.
And yeah, it's just, it's likealmost like a secret club, you
(39:35):
know.
Speaker 2 (39:35):
Kind of yes, yeah, I have to agree with that, it's
just, but it's just a club.
Well, really it's not a club,it's just a community that just
has changed lives.
I mean, our lives have beenchanged, Our lives have been
enriched by it.
Really it has.
I mean just, and not onlymeeting, you know, other parents
with their children withdisabilities, it's just the
(39:57):
community.
And I think the community isreally starting to accept, not
the disability community but thecommunity outside that's
watching, that's looking in,they're starting to really
realize you know, hey, this is apretty cool world to be in,
yeah yeah, it really is so.
Speaker 1 (40:19):
but yeah, I think if that mom had a chance to talk to
you and she was about to walkthat path, she would be so
encouraged, because that's agreat message and it's true.
It's not something that you'rejust fabricating, that is your
reality and that is truth.
Yeah, Fantastic.
Well, thank you.
Wait, wait, wait, wait, wait.
We cannot end this withoutsharing Adrian.
(40:40):
This is what I thought you weregoing to say about his greatest
joy.
How could we skip this?
Tell everybody about whatAdrian does for his hobby slash
business.
Yes, he does.
Well, there's a couple things,but go ahead, tell us about the
one, yeah.
Speaker 2 (40:55):
Okay, so this started about what four years ago?
A little bird whispered in myear and I'm looking at the
little bird.
When you had whispered in myear.
Hey, you know, have you everthought about having Adrian bake
something?
Because we were talking aboutright, we were at a vending show
and we had talked about thatand I just kind of thought why
(41:17):
would he bake anything?
Why would he even?
you know why would we go downthat path?
You know, I think that's thefamily.
We still have some challengeswith him, but anyways, we ended
up giving Adrian a family recipe, and it was a family recipe
that was very easy to make, andI knew that this was a recipe
that he could, you know, work on, that he could make himself.
Speaker 1 (41:40):
Right.
Speaker 2 (41:40):
And so we had him and it's been four years I was
looking at the data it's beenfour years.
We had him start making Mexicanwedding cookies and we came up
with the name.
That was called Adrian's TastyTreats, and it has really
evolved.
It has.
He started, you know, makingcookies, selling them to friends
(42:03):
and family, and then from therewe started doing shows, a few
shows, and I remember one timewe did a fundraiser for the Step
Up for Down syndrome walk andboy, that was a lot of cookies.
He was like this is a lot ofcookies.
But the thing about thebusiness is we don't like, for
example, we will do shows in thespring and in the fall.
(42:28):
We really don't do anything inthe summer.
It's just too hot and also thereason I do that is I don't want
him to get burnt out on baking.
He really enjoys it and I thinkthe highlight for him is he
likes he loves meeting hiscustomers.
He loves meeting new customers.
He really really does, and Ithink that's the reason why he's
so excited about this and Ithink that really really does.
(42:50):
And even when we do the shows,he is excited about doing the
shows because he likes meetingnew people and he's out there
and he's selling them and we'reteaching them, we're coaching
them Okay, this is what you needto say, this is how much they
are and so it helps with hissocial skills as well.
It really really does.
And so now I finally, afterfour years, put him on Facebook,
(43:13):
on a Facebook page, because Ijust was a little, I'm just a
little leery about, you know,social media, especially with my
son, but he now has a Facebookpage which is Adrien's Tasty
Trees.
And yeah, no, and when I say ithas evolved, I mean we have new
shirts now, new chefs codes andwe just it's growing, little by
(43:36):
little, it's growing.
Speaker 1 (43:38):
And that's how I want it to grow.
Do you ship the cookies?
Speaker 2 (43:40):
We do.
We do ship the cookies we do.
We've had done that in the past.
We will put the link down belowwe.
I think the furthest they havegone is to Montana.
Speaker 1 (43:51):
Yeah, yeah, I'm here to say that these cookies are
amazing and you can't just get adozen, because the first dozen
is like the appetizer they justmelt in your mouth.
And then the second dozen islike now I'm really having my
cookies.
So two dozen minimum limit,yeah, for orders.
Speaker 2 (44:09):
Yeah.
But, they're really.
They're really.
They have been very popular.
We've tried adding a differentcookie, like a couple of weeks
ago we started because it was sohot outside.
We said, okay, let's just go inand bake and see what else we
can create, and we made thesewonderful cookies and they came
out so great, and then I was, wewent in there to make them
again.
Just didn't turn out, I don'tknow why.
(44:33):
And so you know, there's timeswhen I feel like you know, I
would like to add anotherproduct in there, but it just
doesn't seem to work out andeven if some of the products are
has more steps in it.
I think that kind of throws himoff, because this recipe, this
certain recipe for the Mexicanwedding cookie, he knows it.
Speaker 1 (44:54):
Yeah.
Speaker 2 (44:54):
You know, he knows it , you know and he knows what to
do, he knows the steps, and sowhen I throw in something else,
it just takes him a while toadjust and to just really
understand it.
Right, you know so I thinkthat's how their mind works.
When they have something thatthey know how to do it.
It's habit for them?
(45:15):
Sure, it's habit, and so we'llsee.
We'll see if we continue withthis other product.
Speaker 1 (45:22):
Yeah, his cookies are amazing.
I love them.
The other thing I want you tomention is about his drumming.
Is he still drumming?
Speaker 2 (45:30):
Oh, yes, he still drums.
We had to, you know, since wemoved into our house, we
downsized and so we don't have awhole lot of space.
So his drums are in my closetright now, and so he does.
He goes in there and he'll drum.
The only thing is that, youknow, it would be nice to have
someone come in and teach him,but then again we don't have the
time because he has a very busyschedule also, right.
(45:51):
So, but yeah, he does, he stillgoes out there, he still drums
and he still plays his music.
He doesn't do it as often as heused to, but he still does.
Speaker 1 (45:59):
And he I mean he was invited to at the One Vendor
Fair.
He performed on the stage tohis drumming, which was amazing.
I know he's done that a fewtimes.
So yeah, you know, if you havea young child with a disability,
realize that their future canbe very rich.
They can become a musician,they can become a baker selling
fabulous cookies.
There's a lot of things theycan do.
So just because they have adisability doesn't mean they
(46:22):
aren't capable of accomplishinga lot.
Speaker 2 (46:24):
Exactly, exactly, yeah, awesome.
Speaker 1 (46:28):
Well, thank you so much for being here, Susan.
This was very enlightening.
I loved having you on.
Speaker 2 (46:32):
I'm so excited you're here with us today.
Thank you so much.
Thank you for having me.
Speaker 1 (46:37):
Thanks for listening to the Embrace the Blessing
podcast.
Visit embracetheblessingcomslash podcast for show notes and
links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
just like you.
Hey there, I'm Sandy Deppish, and this is the Embrace
the Blessing podcast.
Each week, I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Well, thank you so much forbeing here.
I was just thrilled to have youon.
I was thinking about it today.
Your family was one of the veryfirst families we met when we
moved to Houston that had achild with a disability very
(00:52):
well, same disability as our sonhad.
I don't want to steal yourthunder I'll let you talk about
that, but I remember my husbandcoming home and saying I just
met the greatest family and theylive in our neighborhood and it
made us feel like we belonged.
Speaker 2 (01:06):
Yes, it was very, I would just want to say, maybe
just a divine moment, becausethere wasn't anyone else in the
neighborhood that I had met thathad a child with a disability.
Speaker 1 (01:18):
Yeah, yeah.
And it just felt like a kindred, like we had a kindred spirit
between us.
Speaker 2 (01:22):
We did, we really did .
It was amazing.
Speaker 1 (01:25):
Awesome and the families were what like three at
the time they are a year apart.
Speaker 2 (01:31):
So Josiah is a year older than Adrian.
So Adrian was two, josiah wasthree.
Yeah, yeah, gosh and now lookat them, I know.
Speaker 1 (01:42):
So what I would like you to do is introduce yourself
and tell us a little bit aboutyou.
Speaker 2 (01:47):
Oh, about me?
Well, first let me introducemyself.
My name is Susan AguilarAguilar.
In Spanish, a series is Aguilar, right, yeah?
So I well, I want to tell you alittle bit about my family, if
that's okay.
Yes, I have.
I've been married to my husband, julio, for 28 years now.
(02:08):
We have two kids.
My oldest is Juliana, she's 24,24.
And Adrian is my child withDown syndrome, and he is 20.
And we live in the suburbs ofthe Houston area, the chaotic
Houston area.
Speaker 1 (02:25):
Yes, it just keeps growing and growing and growing.
It does so.
Tell us a little bit aboutAdrian, because that's why we're
here.
We want to learn more aboutwhat life has been like
navigating this path with him.
Speaker 2 (02:37):
Well, in the beginning, I mean it was really
and I shouldn't say easy, butwhen they're little it was just
easier.
It was easier to navigate lifewith them.
You know he was small, he was,you know he obeyed, he listened.
When he got older it's we hadissues with him as far as
(03:00):
anxiety issues and we couldn'tfigure out what that was.
But for the most part, Adrian isjust a very gentle yes, a
gentle spirit, very gentle, justlike his dad, and he's very
laid back, loves music, loves todance, loves meeting new people
.
I mean, he absolutely likesmeeting new people.
He likes going up to people and, just, you know, introducing
(03:22):
themselves.
If he sees a person with adisability, he'll say, hey, I
know them from the center, or Iknow them, or he'll go up to
those people with thedisabilities because he feels
like they're like him.
Yeah, yeah, you know, and heunderstands, and so he'll go up,
or he'll tell me, you know, letyou know, or he'll point for us
(03:43):
to go and introduce ourselves.
That is so sweet, so, yeah, andso he does that.
But for the most part he's justvery, he's a very chill kid for
the most part.
He really is Well.
Speaker 1 (03:55):
so let's back up to when, before he was born, did
you know you were going to havea child with a disability?
Speaker 2 (04:01):
None at all.
I didn't know at all, and itwasn't until he was born, that
we found out, Did they tell youimmediately or did it?
Speaker 1 (04:09):
oh the day, Okay yeah .
Speaker 2 (04:11):
Well, they told me hours later because I had a
C-section with him.
And so they came in and beforethey even gave him to me, you
know, the nurse was at the footof my bed and telling me your
son has a lot of characteristicsof Down syndrome.
And I was like, what does thatmean?
I had no clue, Sandy, no cluewhat Down syndrome was.
I had a neighbor who her sonhad Down syndrome, but I yet
(04:37):
didn't understand all of it.
You know, I didn't know what hehad.
I knew he had a disability.
Speaker 1 (04:42):
Right.
Speaker 2 (04:43):
And she was a God sent.
She really was.
She came in and helped and just, you know, helped with a lot of
information and encouragementand just told me it was going to
be fine.
But I didn't know.
And when they told me that hehad Down syndrome, my first
thought was, like, is he goingto die?
You know, that's what was mythought.
I did not know anything aboutthat.
(05:05):
I thought it was an illness.
Right, that's really what Ithought, and so I wasn't
educated about it.
So after they told me you know,no, they lived about 50 to 60
years and like, oh, okay, let mehave no problem as long as he's
not going to die and there's astory behind that that I can't
(05:26):
go into right now, but it was.
It was more of a reassurance.
Okay Then.
And then in my part I knew wewere good and we could handle
what comes down the road.
So, and I know a lot of peopledon't feel that way, but it was
my journey and there wasreasonings for that.
As long as he wasn't going topass away, we were going to be
good.
Speaker 1 (05:44):
Right, and so how old was the neighbor's child that
had Down syndrome?
Speaker 2 (05:51):
When Greg was probably in his twenties.
Okay so she had a lot ofexperience.
Speaker 1 (05:57):
That was a great mentor for you to live near it
was.
Speaker 2 (06:00):
It really was right behind me and in and when we
lived in New York.
You know, in the homes in NewYork no one has a backyard fence
like we do in Texas.
Speaker 1 (06:09):
Right.
Speaker 2 (06:10):
And he was just my backdoor neighbor and we could,
just you know, cross ourbackyards and go into each
other's house and just you know,and that's when I had a better
understanding what Down syndromewas and educating myself.
Yes, after that you know, whatit was.
Speaker 1 (06:25):
What a blessing it was to have her right there.
You know, when Josiah was, whenhe was diagnosed, when I was
four months pregnant, we inUdero that we were going to have
a child with Down syndrome andmy reaction was kind of like,
wow, this is going to be cool wehave, for typically developing
kids Like this will be fun tohave a different adventure.
You know, like I'm always upfor adventure so I was thinking
(06:47):
it was a fun adventure.
Well, yeah, god laughed.
But anyway, what was sointeresting is the woman that
lived next door had a grandsonwho was, I think, maybe six to
nine months older, who had Downsyndrome.
Speaker 2 (07:02):
Oh, wow.
Speaker 1 (07:02):
And so she said come on over, meet my grandson, meet
my daughter, meet the family.
You can see that.
You know, he's just anotherchild, he just has the medals to
jump over, you know.
So I love that God put peoplelike that in our paths when we
were just in that very new stageof trying to understand what it
was going to be.
Speaker 2 (07:20):
you know, and you know the funny thing about that
before we had moved to New Yorkyou know we were my
sister-in-law was praying overus.
As she said there's going to bea woman in your life that's
going to help you.
Wow, and I'm like, okay, noclue as to what she meant and
that was before you.
Speaker 1 (07:39):
I mean obviously you didn't know you were going to
have a child with Down syndromeor anything.
Speaker 2 (07:42):
Yeah, yeah, yeah, and that was her.
Speaker 1 (07:47):
That's amazing.
Do you still keep in touch withher?
Speaker 2 (07:49):
Oh yeah, oh yeah.
She's one of our biggestcheerleaders with Adrian and us
with Craig.
Yeah.
Speaker 1 (07:55):
It's really nice.
Yeah, we still do.
Speaker 2 (07:57):
She lives.
You know we don't see her, butyou know we're in touch through
Facebook.
Speaker 1 (08:01):
Yeah, oh, I love that yeah.
So I know you have a lot ofthese because Adrian is an
amazing guy, but share yourgreatest joy in parenting Adrian
.
Speaker 2 (08:12):
I would have to say when we homeschooled him, even
though it was hard homeschoolinghim was hard in the sense that
I had to modify all of hiscurriculum, but I think the
greatest joy was seeing himgraduate from high school.
It really was.
That was one of our greatest,you know, my greatest joy,
(08:32):
because I knew that we hadaccomplished the homeschooling
process, which is not easy inthe first place at all, and then
to have to modify hiscurriculum.
But yet he had an understanding, a very good understanding of
what was being taught to him andhe enjoyed it.
(08:53):
And he especially enjoyedscience and history.
And a lot of that was becauseit was hands-on.
I mean, I think he could dowithout math and spelling and
all of that, but because ourcurriculum was, I made it
hands-on for him.
He really enjoyed those subjectsand he still, to this day, he
(09:13):
still has.
You know, we can be goingsomeplace and he'll see a planet
or he'll see a certain fish orwhatever.
You know what we had studiedand he'll say you know, he'll
tell me what it is.
So he still has memories, hestill has.
What do I want to say?
He still has, he stillremembers.
He still remembers a lot of theteachings that we did.
(09:35):
And yeah his accomplishment whenhe graduated from high school
was just really overjoyed.
It was just a joy to really,you know, see him and he was
proud.
Speaker 1 (09:46):
That's what I was going to say.
He was beaming.
Speaker 2 (09:49):
He was.
Speaker 1 (09:49):
I mean, he's always a pretty happy kid when he's out
and about, but you know, to seehim beaming at his graduation he
was definitely so, so proud.
It was just a huge, hugeaccomplishment.
Speaker 2 (10:00):
It was a huge milestone for him.
It really was, and for you too,I mean yes.
Speaker 1 (10:05):
Homeschooling.
You know, I homeschooled a fewof our kids when they were very
little, for, you know, four orfive years and it is not an easy
task.
It's a daily grace filled getme through this journey kind of
a thing.
And those are typicallydeveloping kids, right, yes, but
you throw in a child withchallenges and, like you're
saying, modifying the curriculum, like how did you know, did you
(10:25):
?
I mean, I guess what I'm askingis that was probably a very
labor intensive process.
It's not something you can doon the fly.
You have to prepare.
Speaker 2 (10:35):
And that's what I would do every night.
You know, as often as I could,I would just prepare and we use
curriculums that were, you know,like, for example, science, we
use the apology and they have ajunior book and so I use the
junior book and yet through thejunior book, I still had to
modify, you know, to his leveland just create.
I mean, I was online a lotprinting and cutting and just
(10:58):
just it was.
It was just it was a lot ofwork.
It really was.
But you know, if, when I lookback, I did, there was a point,
I think in the 11th grade, whereI did, I was just burned out
and I remember just telling himthat year I said this year we
are just going to focus on yourreading, your math and your
spelling, you know, because itgot to the point where I
(11:20):
couldn't open a book again.
Yeah, I just couldn't open abook because I was so burnt out,
because it was hard, but we gotthrough that year and he was
okay with that.
He was okay with that.
So when it came through his12th year, the grade, you know,
we went back to it and it wasbetter, but I was like, okay,
last year, we're good.
Speaker 1 (11:41):
But that's the beauty of homeschooling you can amend
the days or the weeks or theyear to fit what's going on in
your life currently, and youneeded a break.
Speaker 2 (11:50):
I did.
Speaker 1 (11:51):
And that was very wise of you to structure it that
way, so you could have somebreak down time too.
But here's what I think youneed your own graduation party.
Why don't we celebrate you, yay, you made it too.
Speaker 2 (12:05):
I retired, but yet I didn't, because we still, three
days out of the week, we stillwork on reading, phonics, speech
skill and math, and it's justto keep his brain going, it's
just to keep him not so muchbusy, but just to still have an
understanding of you know and hecan read and those are some
(12:29):
very proud moments.
They're small books, they'restill books of the first or
second grade, but he does areally good job with those and
it's just I'm very proud when hedoes that.
I always just told him you'redoing such a great job.
His math.
We've gotten to the point nowwhere in his math we still
continue to work with money,even though we're a society
(12:49):
right now that doesn't use awhole lot of cash.
But I, you know, he still knows, you know the bills and the
coins and what they are.
But now with math it's more ofusing his calculator.
Speaker 1 (13:01):
Yeah.
Speaker 2 (13:02):
So you know, and it works.
Speaker 1 (13:04):
Yeah, exactly, does he enjoy doing the schooling now
?
Speaker 2 (13:08):
He does when it's because it's shorter.
Yeah, I mean, there's timeswhen he wakes up and he's like
you know, what's on the agendatoday.
And I'm like if you went toschool and he's like, okay,
let's just, you know, hisattitude is like let's just get
that out of the way, you know,because he wants to go do what
he wants to do for the rest ofthe day, which is dance and play
with his toys, or you know.
(13:29):
So, yeah, I mean he, hetolerates it.
I should say he doesn'tcomplain about it, he tolerates
it and he knows it's for ashorter time, it's only 45
minutes.
Oh yeah, that's great.
Speaker 1 (13:43):
I love that you're continuing to stimulate his
brain and keep him active withthe things that he needs to
learn.
That's awesome.
So now I would like you to tellus about a time that maybe was
really difficult for you guys.
Think about what it was likewhen you walked through those
moments, and take us to thattime.
Speaker 2 (14:02):
I want to say it was about two years ago, maybe two
or three years ago, when hestarted having anxiety and we
didn't know what it was.
We didn't know why his handswould turn blue, his lips would
turn blue, he would vomit.
You know, just you know thingsthat made him anxious.
(14:23):
He would just throw up.
We cleaned up a lot of throw up, but we didn't know what it was
, even though, like, I took himto the gastrologist, I took him
to different doctors trying tofigure out what is going on with
him.
And I remember my daughter,juliana, telling me she was
taking a psychology class.
(14:44):
She goes you know that he'splaying you.
You know that he's manipulatingyou.
I'm like, not, my sweet boy,he's not manipulating.
That was hard for me to wrap mymind around.
It really was.
I couldn't believe that hewould do that because, you know,
then I started seeing a lot ofit was behavior, because he'd be
fine on the weekends, no issues, but during the week, you know,
(15:08):
he was having issues and it gotreally escalated.
We just, you know, startedworking with him and telling him
you can't do that, but he wouldstill do that, he would still
have anxiety during the weeks.
And finally, about a year ago,we were able to get a behavioral
(15:29):
therapist, josie Avila, withMichelle Garcia.
Psychology came into our lifeand what a concept she was.
She started working with him.
She would come weekly and startworking with him and it started
helping because he startedunderstanding that it wasn't
(15:51):
just us trying to tell him.
This behavior is not acceptable.
She started telling him.
She started telling him and shestarted giving us coping skills
, giving him coping skills whatto do.
And it took a while.
Still, it still took a while.
He still had anxiety.
He still had, for example, whenI had a calendar and I would
(16:15):
always fill his calendar up withall his activities and I guess
just the thought of some of theactivities when he would have to
think that he was going to godo those activities it would
just stir up anxiety in him andhe would just be so nervous he
didn't want to go.
And trying to get him there washard as well.
(16:38):
But once we got there, he wasfine.
He saw that he could enjoy theactivity, but he was getting him
there.
And so now what I do is I don'tput all of the extra activities
on the calendar anymore.
I, just an hour before.
I'll just tell him OK, let'sget ready, let's get going.
(17:01):
And that has seemed to work.
And Josie was here yesterday.
She now comes every threemonths.
She doesn't come weekly.
She helped so much with Adrian.
She worked with him, she talkedwith him.
She just really motivated himto be an adult.
Use your coping skills.
Learn how to use your copingskills to where, if you have
(17:25):
anxiety, you're able to usethose skills and come out of
that.
And it has worked.
It has worked.
Yesterday we had an issue.
Well, he didn't want to go runerrands with me, but there's no
one to take care of him at home,and so I had to go run the
errands and so he started usingthem and he's starting to use
(17:49):
them and he's starting torealize, oh, this is what I need
to do and this is how I need todo it.
And so she came in yesterdayand we told her the story and
she was just very proud.
She just says I am so proud ofyou, adrian.
She says you are becoming a man.
And she talks to you.
She goes you need to be a man,you need to be an adult, don't
act like a baby.
And he was just he was.
(18:09):
He was really happy to see that.
She was just proud of him.
Speaker 1 (18:14):
Yeah, she was proud.
Well, it sounds like he's madefantastic progress.
Speaker 2 (18:18):
He has, he really has .
So we still have our hiccups,we still have issues, but
they're not escalated like theywere.
Speaker 1 (18:28):
Right, yeah, and you know what?
It's interesting that you'retalking about anxiety, because
for years I had no clue that mychild had anxiety.
Speaker 2 (18:38):
Yeah.
Speaker 1 (18:38):
And when I think about it now, it makes so much
sense that I mean, we didn'thave the same symptoms of the
anxiety, but very clearly a lotof anxious thoughts or whatever
was going on in his mind causedsome behavior challenges.
And you know, I don't know howI discovered that, I don't know.
(18:59):
Maybe I read about it in a bookor something, but it was like a
light bulb moment, like, oh mygosh, it makes so much sense.
And I think that if you have achild with Down syndrome
specifically, and theirbehaviors are becoming a
challenge as they becometeenagers and young adults, that
might be something you want tolook at, because I was clueless.
(19:20):
Clueless, I mean, I try toresearch and stay on top of
things and try to understandeverything that's going on, and
that was the piece that justfell through the cracks.
And now I'm very aware and,like what you were saying,
adrian was very calm on theweekends but very anxious during
the week.
What I noticed is with one ofthe caregivers that Josiah had
had for a long time he's adifferent kid.
(19:40):
He's very calm, very peaceful,and then when that person is
removed from the situation, wehave this bundle of energy
that's spiraling out of controlsometimes, and I realized that
with that individual Josiah felttotal peace.
There was like yeah, totallyLike there was a confidence and
(20:02):
security and I don't understandhow it attached to that person,
but it did, and if we couldreplicate that and sell it in a
bottle would be millionaires.
But we've tried to mimicwhatever that was and it's just
not there for anybody else sofar.
That doesn't mean that it won'tbe, but it's interesting to me
(20:23):
that with certain people thatanxiety completely is gone, but
then when they're out of thepicture they're back to lots of
coping, trying to get throughthe limits.
Speaker 2 (20:34):
And that's what happens with Adrian.
Yes, and because his anxietywould subside because his dad
was here, or because Julia washere on the weekends, or it
could have been because wedidn't have anything scheduled.
Or the weekends were fun.
Do you see what I'm saying?
Yes, and it could have beenthat too.
And so it was.
(20:56):
And again it was with theperson, I mean his dad.
Adrian is so glued to his dadthat when he gets married he's
like I'm going to tell dad ordad's my favorite, you're not my
favorite anymore.
It's like it's OK.
Speaker 1 (21:10):
I don't want to be your favorite.
Speaker 2 (21:12):
It's OK, I'm glad he's your favorite.
He'll tell me, or he says he'smy best friend and I'm like I'm
glad he's your best friend.
But yeah, it is, it is.
It's with a certain person,it's a bond that they have.
Speaker 1 (21:27):
Right.
Speaker 2 (21:27):
And so.
Speaker 1 (21:29):
I'm so grateful that they, that at least they have
that with someone where theyhave those days of moments where
they're peaceful and calm andnot feeling that anxiety.
You know, it's interesting thatyou mentioned about the anxiety
causing causing him to vomit,because I just was talking to a
grown 20 something like closerto 30 something woman the other
(21:51):
day and she was saying that shewas very anxious and every time
she gets extremely anxious shevomits, and I had never heard of
that, you know.
I mean I was aware with Adrian,but I hadn't heard of that from
other people.
So I mean that makes sense.
Speaker 2 (22:06):
And to me, I think it was also a way that he couldn't
really express verbally whatwas going on, and so that was
the only way that he was able toexpress it.
It was just hey, I'm not doing.
Well, I'll show you.
Speaker 1 (22:24):
Let me show you how bad it is.
Oh God, bless him.
Well, I'm glad you're on theother side of that.
You know, and that had to be areally rough road.
Do you have any helpful hintsor tips that you use to keep a
positive attitude when thingsget really hard, Like in those
moments in those couple of yearswhen it was challenging and he
was you were cleaning upconstantly.
Yeah, how did you stay positive?
(22:45):
How did I stay positive?
Speaker 2 (22:47):
I cried a lot.
No, I had to really just.
I had to just really run to anemperor and just, you know,
because there was times when itwas just like I don't understand
this, this is hard, you know, Idon't know how to get through
it, and there was times when Ifelt like we were never gonna
(23:07):
get through it.
You know, because it was adaily challenge, a daily
challenge, and I just felt and Iwould just, you know, just to
be honest, would just run to Godand just say I can't do this
and just you know, being in Hispresence and in His word, I
would, you know, come out calmerand with a better perspective
(23:30):
and more clarity of mine as tohow to handle it, because it was
hard you know, it wasn't easyat all, especially having to
clean up all the time.
I remember one time, you know, Iwould try to hurry up and get
ready, you know, if we weregoing someplace and he was
playing with his toys and I wasgetting ready and I came out and
(23:50):
he had throw up all over himand he just looked at me like
what are you gonna do?
And those moments I mean it wasjust like and there was a lot
of those moments like a defiantmoment where he was being
defiant on purpose, and that'swhy I knew it was anxiety, but I
(24:10):
also knew it was behavior.
Speaker 1 (24:13):
Well, it sounds to me like it was anxiety that caused
him to be so to the point ofvomiting.
But he learned this delays usfrom going, or it stops us from
going, because now I probablyneed a shower, I've got to have
a change of clothes, We'vemissed the window to get where
we're gonna go for the eventwe're going to.
So he's smart and figured outoh, this is working for me,
(24:38):
which not fun for you guys.
Speaker 2 (24:41):
No, and we would clean up and we would have to go
and continue to do whatever wewere going to do.
But believe me, I was feeling,you know, because those were
hard times when you know you areready to go, and he just does
that.
Speaker 1 (24:57):
So do you think that it was the behavior therapist
that changed everything, or doyou think, like he matured a
little bit?
I mean what he did he didmature.
Speaker 2 (25:08):
I do believe that he was coming out of whatever that
teen year or was, and he did, hedid mature, he started maturing
and with Josie coming in atthat same time, it just worked
together.
Yeah, that's great.
Speaker 1 (25:23):
Yeah, so I mean the takeaway from this, and this is
why I always ask parents what'syou know a hard season that you
walked through and how did youget through it?
It's because we neveranticipate that things are gonna
be hard, especially whenthey're little and like you said
they're so easy and they're socute, and that's not to say all
kids are gonna do this, butthere come seasons where it can
(25:44):
be really, really hard, and whatI want people to understand is
it doesn't last forever.
Now it does, it's hard and youneed support to get through it.
You need that's what I said.
I never spent more time on myknees than I did during the
years when we went through majorchallenges.
But it brings you closer to Godand it gives you such a stronger
faith, and for me, I had tojust let it go and go.
(26:05):
He's yours.
Like you got this kid because Idon't you know, but I think
parents need to know it's notgonna last forever.
You will get through it andyou'll come out on the other
side stronger, and I think theplan is then that you reach back
and help others who arefollowing behind you to help
them know you're gonna be okay,like the neighbor you had with a
20 year old.
She's like it's gonna be fine,you're gonna be all right with
(26:26):
this, you know, which is prettyawesome.
So do you have a product or aresource that you can share that
has impacted your world in apositive way?
Speaker 2 (26:36):
Other than Josie.
No, I mean we go to Swallowingand Speech Therapy.
Miss Elizabeth has reallyhelped Adrien in his speech
therapy where he's now workingon putting sentences together.
You know Adrien usually speakswith one word or two words and
(26:58):
you know you have to kind offigure out what he's trying to
say.
But now we're working with withtrying to put sentences
together and yesterday whenJosie was here, she's like I am
understanding him a little bitmore when she was speaking to
him because she was justspeaking to him and she's like
his speech is much more clearerand he's speaking a little bit
(27:20):
more in sentences versus whereAdrien used to speak, you know,
with one or two words he wouldask him a question and or he
would say one word and you hadto decipher what he was trying
to say.
But Swallowing and Speech is agood resource.
Speaker 1 (27:39):
I'm glad you mentioned that, because that was
something I was gonna look intoduring the right before the
pandemic started and then it'sbeen out of my head ever since.
So I'm glad you said that Ineed to look that up for Josiah.
Yeah, that's good.
Speaker 2 (27:50):
I mean.
Well, we also attend theJetpack, which is something that
he has absolutely loved.
They have a program forindividuals with disability and
they challenge them.
You know they do challenge themevery time that they're going
to have a performance.
Speaker 1 (28:07):
Tell everybody what the Jetpack is.
What is that?
Speaker 2 (28:09):
Well, the Jetpack is a theater, vocal and arts
performance program and whatthey do is they put on a lot of
shows.
They put on a lot of dramashows, a lot of theatrical shows
, and they have a class for theindividuals with special needs
(28:31):
and it's just.
It's been really good.
It has been one of Adrian'sfavorite activities.
Speaker 1 (28:36):
You know, too, Does he get anxious before?
Speaker 2 (28:40):
he goes there Not at all Wow.
Speaker 1 (28:41):
And that's so interesting to me, because he
has to perform and he likes it.
No, he likes it.
Speaker 2 (28:46):
That causes anxiety for most other people right, but
not him.
He absolutely likes it, nevergets nervous.
He never gets nervous when hegoes there because it's one of
his favorite things.
Speaker 1 (28:57):
Yeah, yeah, that's really cool.
I love that.
What are your hopes and dreamsfor the future for Adrian Well?
Speaker 2 (29:05):
short term is to continue to work on with his
speech, to get him tocommunicate with other
individuals where otherindividuals are able to
understand what he is saying.
So that's my short term goalwith him to work that way.
Long term, I guess it's justreally to have him be more
(29:32):
independent, continue to work onhis life skills.
That I really don't have a planfor long term just yet.
Speaker 1 (29:43):
Right, yeah, I think that's the way a lot of us are.
I mean, it's hard to thinkabout the future for our kids.
I mean, for me it's easier toplan for just the next week or
the next couple of months, butto see way into the future is
like ooh, that's a lot, becauseit's a lot to just get through
the day sometimes.
Speaker 2 (30:02):
I was going to say that just trying to get through
the week, just trying to planfor the week, is a little bit
challenging sometimes, and notalways, but sometimes, and it
had been in the past.
But even the thought of longterm where is he going to be?
Whether is he going to be in agroup home?
I don't know.
Is he going to be with hissister when we're not here?
(30:23):
I don't know.
So those are the things that Ireally don't have quite of a
vision for just yet.
I think my whole thought on thatis to just get him to learn
more life skills, to beindependent.
Can he stay home by himself forseveral hours?
Can he prepare a meal forhimself, not on the stove or not
(30:47):
turning on the oven, but just abasic meal for himself?
Can he prepare those things?
Those are some of the goalsthat I would like to see and
that we are working on throughhis HCS program.
So those are the only goalsthat I have right now.
Like I said, I don't haveanything that's just out in the
(31:07):
future.
Speaker 1 (31:08):
Right, yeah, and here's where I always default
whenever people ask questionslike that what's going to happen
when he's over?
I don't know.
Speaker 2 (31:17):
I don't know God does .
Speaker 1 (31:19):
God does and he'll work out that plan and he'll
clue me in when I need to know.
You've heard us talk about thepersonal support networks.
Speaker 2 (31:27):
Yes, I have.
Yeah, Jennifer, I met up withJennifer at the Verne Cox Center
.
There was a swim day and wewere talking and she was telling
me a little bit about that.
Amazing, really.
Speaker 1 (31:39):
I'm reading the book that started that whole process.
It's called A Good Life.
I'll share the link with you andI'll put it in the show notes.
It's an amazing book about howso many people who initially
were even resistant to the ideaor just not sure they wanted to
open up the privacy of theirlives to their family, to others
(31:59):
.
But what happens is you'reslowly releasing.
That's what we do with ourtypically developing kids.
We slowly release them from usand wish them their own
independence and have a life oftheir own.
But then when we have a childwith a disability, we tend to
cling because we don't haveanybody we can feel comfortable
just releasing them to, and sothe idea is to empower other
(32:21):
people to get to know our kidsand everything that they need to
support them as well as we knowthose things, so that when
we're no longer able to if it'seven just for a short term maybe
you have a surgery or somethingor for the long term, all these
people know your child so wellthat it's like we got this.
And it doesn't mean they'regoing to come in and they're
(32:42):
going to take over and yourchild is going to move in with
them.
It means that they areempowered to be able to take
next steps according to thewishes that you have, and it's a
lengthy process.
It's like a marathon, not asprint, so you have time to
think through things together asa group.
I love it.
I am so on board with this idea.
Speaker 2 (33:03):
We're having.
Speaker 1 (33:03):
Joe Sy's first meeting with his team next week
and I'm just ecstatic becauseI'm like sit down and let me
tell you what you need to knowhere it comes.
Speaker 2 (33:14):
That's the beauty about what Jennifer was telling
me is that it's just my husbandand I that know all of Adrian's
information, and she says herthought was, when other people
know, like you said it, andwe're not available or something
happens to us, even if it'sshort term, all these other
people know.
They know his doctor's names,they know his appointments, they
(33:37):
know his Medicaid, Medicare,whatever Social Security, they
know all of more details abouthim in order to be able to care
for him.
Speaker 1 (33:48):
And it's so freeing to get that off your shoulders,
like I'm not the only onecarrying all that around in my
head.
Somebody else knows it too.
And what I love about it islike if there's something you
need to know, you can assignthat or ask if anybody in the
team is interested in hey, couldyou research this for me?
I really don't have time, but Ineed to know about this.
And then they can learn aboutthat for you and share it with
(34:10):
the group.
And now everybody knows that.
You know it's just, it's such asmart idea.
Speaker 2 (34:14):
And I think it's a smart idea in the sense that,
like you said, everyone knowsthe need Right.
You're not the only ones.
Speaker 1 (34:22):
And you know, what's really interesting to me is that
Josiah tends to prefer to beisolated if he doesn't like to
be in large groups.
He doesn't like to be around alarge amount of people.
And at his very first meeting,which was just, you know,
telling everybody what thissupport group is like so that
they can make a decision whetherone to be a part of his team or
not, he stayed in the meetingthe entire time.
(34:45):
It was like two hours.
He sat on the couch andlistened.
I was amazed by that.
And so the other thing about thepersonal support network sorry
I'm laboring this, but I'm justso passionate about him is that
it helps the individual, who isthe center of this support
network, understand that theyare not alone, that they have
(35:07):
people who care about them, andoftentimes our kids and us lead
more of a life of isolationbecause of the disability, and
now they have built in friendswho are there because they want
to be, not because they're paidto be.
Exactly.
And that really struck a chordwith me is that it's gonna
provide friendships for him, andI was like all about that.
Speaker 2 (35:30):
Well, for him to stay there I mean he was just.
I mean it has a lot ofunderstanding, more than I think
we all really realize and Ithink for him to listen and know
that the different individualswere there.
I think that made a difference.
Yeah, yeah, that was prettycool.
Speaker 1 (35:47):
So if you were sitting with someone who was
just about to step in your shoes, a new mom who was just about
to have a baby and they weregonna hand that baby, before
they hand that baby to you, theywere gonna say, oh, he has all
the characteristics aroundTindra, she's about to walk the
path that you walked.
What encouragement would yougive that person?
Speaker 2 (36:05):
I would tell her it's going to be okay.
It is going to be okay and Iwould say, embrace the blessing,
like you would say, because itis a blessing and the life that
one lives with a child with adisability has opened so many
doors of not only meeting somany amazing families yes, and
(36:28):
their child with a disability.
You know what?
I will go back into that and ina little bit, but I would just
say it's going to be okay.
Find a good support group.
Yeah, find a good support group, because you'll be walking the
path alongside with others whoare going to have the same
challenges or maybe a little bitdifferent, but it's about the
(36:48):
same.
And to have walked this walkwith people with disabilities
and the people that we have metand encountered, it's just a
rich world.
It really is.
I mean, people on the outsideprobably look at us or look at
the families and think, oh, theyfeel sorry for them because
they have a child with adisability.
(37:10):
But I think we, as a parent, Ithink we are their biggest
cheerleaders.
But not only that, we are thecheerleaders for all of the
individuals that we meet.
Right, you know, when they havethese accomplishments, we
really cheer them on as well,because we want to see them meet
(37:33):
their goals or just meet theseaccomplishments, and I think
that's a beautiful world.
What I have noticed is thatthere is not in this community
that we have been in, there isnot any competition within each
other.
I have noticed that, yeah, everyparent shares the other
individual's child rightaccomplishments on.
(37:54):
I mean, we support them, wecheer them on, we're glad, you
know, we embrace them and wejust love on them.
We really, really love on themand that's.
You know.
It's a beautiful world.
It really is, and I'm soblessed to be in it.
Would I ever had the chance todo it over again, I would want
(38:16):
to be here Because, like I said,the people that you meet you
know, and not only the people,the individuals, their hearts,
yes, you know, they're just gold.
They really are.
Speaker 1 (38:28):
They're just pure souls, just full of love.
I mean, you know, that's alwaysthe you know cliche people say
oh, people at Down syndrome,they're just so loving Well,
yeah, there's other sides tothat as well but they just are
so unconditionally loving that'sprobably the better way to say
it, cause they have theirmoments too, but they just
(38:50):
accept, and the parents as well.
The parents are so accepting.
You know like we don't alwaysfit in because of you know the
challenges that we have, but formy son I'm speaking.
But he is so welcomed andembraced, no matter where we go,
the moms are like we got this,we'll help you, he's okay, it's
all right and you feel verywelcome, even when internally
(39:14):
you're thinking I need to justget out of here cause this isn't
going well.
No, there's, I totally agree.
I think if we had not had achild with a disability, we
wouldn't have met the mostamazing people that we've
encountered in our lives, peoplewho are so genuine and loving
and selfless and compassionate.
And yeah, it's just, it's likealmost like a secret club, you
(39:35):
know.
Speaker 2 (39:35):
Kind of yes, yeah, I have to agree with that, it's
just, but it's just a club.
Well, really it's not a club,it's just a community that just
has changed lives.
I mean, our lives have beenchanged, Our lives have been
enriched by it.
Really it has.
I mean just, and not onlymeeting, you know, other parents
with their children withdisabilities, it's just the
(39:57):
community.
And I think the community isreally starting to accept, not
the disability community but thecommunity outside that's
watching, that's looking in,they're starting to really
realize you know, hey, this is apretty cool world to be in,
yeah yeah, it really is so.
Speaker 1 (40:19):
but yeah, I think if that mom had a chance to talk to
you and she was about to walkthat path, she would be so
encouraged, because that's agreat message and it's true.
It's not something that you'rejust fabricating, that is your
reality and that is truth.
Yeah, Fantastic.
Well, thank you.
Wait, wait, wait, wait, wait.
We cannot end this withoutsharing Adrian.
(40:40):
This is what I thought you weregoing to say about his greatest
joy.
How could we skip this?
Tell everybody about whatAdrian does for his hobby slash
business.
Yes, he does.
Well, there's a couple things,but go ahead, tell us about the
one, yeah.
Speaker 2 (40:55):
Okay, so this started about what four years ago?
A little bird whispered in myear and I'm looking at the
little bird.
When you had whispered in myear.
Hey, you know, have you everthought about having Adrian bake
something?
Because we were talking aboutright, we were at a vending show
and we had talked about thatand I just kind of thought why
(41:17):
would he bake anything?
Why would he even?
you know why would we go downthat path?
You know, I think that's thefamily.
We still have some challengeswith him, but anyways, we ended
up giving Adrian a family recipe, and it was a family recipe
that was very easy to make, andI knew that this was a recipe
that he could, you know, work on, that he could make himself.
Speaker 1 (41:40):
Right.
Speaker 2 (41:40):
And so we had him and it's been four years I was
looking at the data it's beenfour years.
We had him start making Mexicanwedding cookies and we came up
with the name.
That was called Adrian's TastyTreats, and it has really
evolved.
It has.
He started, you know, makingcookies, selling them to friends
(42:03):
and family, and then from therewe started doing shows, a few
shows, and I remember one timewe did a fundraiser for the Step
Up for Down syndrome walk andboy, that was a lot of cookies.
He was like this is a lot ofcookies.
But the thing about thebusiness is we don't like, for
example, we will do shows in thespring and in the fall.
(42:28):
We really don't do anything inthe summer.
It's just too hot and also thereason I do that is I don't want
him to get burnt out on baking.
He really enjoys it and I thinkthe highlight for him is he
likes he loves meeting hiscustomers.
He loves meeting new customers.
He really really does, and Ithink that's the reason why he's
so excited about this and Ithink that really really does.
(42:50):
And even when we do the shows,he is excited about doing the
shows because he likes meetingnew people and he's out there
and he's selling them and we'reteaching them, we're coaching
them Okay, this is what you needto say, this is how much they
are and so it helps with hissocial skills as well.
It really really does.
And so now I finally, afterfour years, put him on Facebook,
(43:13):
on a Facebook page, because Ijust was a little, I'm just a
little leery about, you know,social media, especially with my
son, but he now has a Facebookpage which is Adrien's Tasty
Trees.
And yeah, no, and when I say ithas evolved, I mean we have new
shirts now, new chefs codes andwe just it's growing, little by
(43:36):
little, it's growing.
Speaker 1 (43:38):
And that's how I want it to grow.
Do you ship the cookies?
Speaker 2 (43:40):
We do.
We do ship the cookies we do.
We've had done that in the past.
We will put the link down belowwe.
I think the furthest they havegone is to Montana.
Speaker 1 (43:51):
Yeah, yeah, I'm here to say that these cookies are
amazing and you can't just get adozen, because the first dozen
is like the appetizer they justmelt in your mouth.
And then the second dozen islike now I'm really having my
cookies.
So two dozen minimum limit,yeah, for orders.
Speaker 2 (44:09):
Yeah.
But, they're really.
They're really.
They have been very popular.
We've tried adding a differentcookie, like a couple of weeks
ago we started because it was sohot outside.
We said, okay, let's just go inand bake and see what else we
can create, and we made thesewonderful cookies and they came
out so great, and then I was, wewent in there to make them
again.
Just didn't turn out, I don'tknow why.
(44:33):
And so you know, there's timeswhen I feel like you know, I
would like to add anotherproduct in there, but it just
doesn't seem to work out andeven if some of the products are
has more steps in it.
I think that kind of throws himoff, because this recipe, this
certain recipe for the Mexicanwedding cookie, he knows it.
Speaker 1 (44:54):
Yeah.
Speaker 2 (44:54):
You know, he knows it , you know and he knows what to
do, he knows the steps, and sowhen I throw in something else,
it just takes him a while toadjust and to just really
understand it.
Right, you know so I thinkthat's how their mind works.
When they have something thatthey know how to do it.
It's habit for them?
(45:15):
Sure, it's habit, and so we'llsee.
We'll see if we continue withthis other product.
Speaker 1 (45:22):
Yeah, his cookies are amazing.
I love them.
The other thing I want you tomention is about his drumming.
Is he still drumming?
Speaker 2 (45:30):
Oh, yes, he still drums.
We had to, you know, since wemoved into our house, we
downsized and so we don't have awhole lot of space.
So his drums are in my closetright now, and so he does.
He goes in there and he'll drum.
The only thing is that, youknow, it would be nice to have
someone come in and teach him,but then again we don't have the
time because he has a very busyschedule also, right.
(45:51):
So, but yeah, he does, he stillgoes out there, he still drums
and he still plays his music.
He doesn't do it as often as heused to, but he still does.
Speaker 1 (45:59):
And he I mean he was invited to at the One Vendor
Fair.
He performed on the stage tohis drumming, which was amazing.
I know he's done that a fewtimes.
So yeah, you know, if you havea young child with a disability,
realize that their future canbe very rich.
They can become a musician,they can become a baker selling
fabulous cookies.
There's a lot of things theycan do.
So just because they have adisability doesn't mean they
(46:22):
aren't capable of accomplishinga lot.
Speaker 2 (46:24):
Exactly, exactly, yeah, awesome.
Speaker 1 (46:28):
Well, thank you so much for being here, Susan.
This was very enlightening.
I loved having you on.
Speaker 2 (46:32):
I'm so excited you're here with us today.
Thank you so much.
Thank you for having me.
Speaker 1 (46:37):
Thanks for listening to the Embrace the Blessing
podcast.
Visit embracetheblessingcomslash podcast for show notes and
links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
just like you.
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